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re: Standing up for Rare Disease and Rare Disorder
Posted on 10/1/14 at 5:29 pm to MikeAllenWrites
Posted on 10/1/14 at 5:29 pm to MikeAllenWrites
What does "Standing up for Rare Disease and Rare Disorder" mean? I read your post and perused the website but what is the goal of your group, other than awareness and contributions, of course?
Posted on 10/1/14 at 6:00 pm to Kentucker
Great question:
When I post the intent is always to inform people, to let people see ways one-of-a-kind minds live life. I didn’t grow up with a 12-step how to overcome GS guide. There may be patients and parents of patients suffering from rare disease and disorder posting on the site. When you’re fighting rare disease and rare disorder, it does help to know you’re not alone. That can come from sharing. A non-profit could lead to research into what trips up brains of those with visual/spatial and numerical processing problems and help develop better ways to help people with these problems. Really, I don’t want something like what happened with the LSAC situation to ever happen again. I wrote a book in February but I just feel a book isn’t enough. I’m happy about the book but I’m hoping a non-profit can address the issues in ways a book cannot.
When I post the intent is always to inform people, to let people see ways one-of-a-kind minds live life. I didn’t grow up with a 12-step how to overcome GS guide. There may be patients and parents of patients suffering from rare disease and disorder posting on the site. When you’re fighting rare disease and rare disorder, it does help to know you’re not alone. That can come from sharing. A non-profit could lead to research into what trips up brains of those with visual/spatial and numerical processing problems and help develop better ways to help people with these problems. Really, I don’t want something like what happened with the LSAC situation to ever happen again. I wrote a book in February but I just feel a book isn’t enough. I’m happy about the book but I’m hoping a non-profit can address the issues in ways a book cannot.
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